Overview

"A comprehensive introduction to the concept of the ""intact mind"" and how it affects disability policy and practice.The concept of the intact mind, first described in a 2006 memoir, refers to the idea that inside every autistic child is an intelligent, typical child waiting to be liberated by the right diet, the right treatment intervention, the right combination of supports and accommodations. The sentiment itself is not new. Emerging largely out of psychoanalytic theory dating back to the end of the 19th century, the intact mind was later amplified in memoirs, where parents wrote of their tireless efforts to free their children from the grip of autism. Though the idea gives hope to parents devastated by a child's diagnosis, Amy Lutz argues that it has also contributed to widespread dismantling of services badly needed by severely disabled children and their families.In Chasing the Intact Mind, Lutz traces the history of the intact mind concept, explaining how it influences current policy and practice affecting those with autism. Lutz provides a historical analysis of the intact mind narrative and describes how the concept--originally unique to autism--has come to inform current debates at the heart of intellectual and developmental disability practice and policy in the United States, including battles over sheltered workshops, legal guardianship, and facilitated communication. Lutz argues that focusing on the intact mind and marginalizing those with severe disability reproduces historic patterns of discrimination that yoked human worth to intelligence, and that it is only by making space for the impaired mind that we will be able to resolve these ongoing clashes--as well as even larger questions of personhood, dependency, and care."

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9780197683842

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Reviews

This is a fascinating book: It is forthright, it is honest, it is comprehensive, it is evidence-based. Importantly, this work tees up essential discussion of 'inclusion,' and how often it too relies on false hope, and distracts from our urgent need as a society to face the demands of guardianships and life-time supports we should be building for our autism community. * Bryna Siegel, PhD, Founder & Executive Director, Autism Center of Northern California; Professor, Child & Adolescent Psychiatry, University of California (Ret.) * Reading this brave, well-researched book I felt myself making a mental list of all the people to whom I'd recommend it. Lutz shows us the perilous seduction of the 'intact mind,' moving us through historic landmarks to the contested landscape in which we find ourselves today. With clarity of style and argument she shows how rhetoric transforms into policy, harming the very people those policies are meant to help. Her approach is one of deep empathy and understanding for those with severe autism, and their caregivers. * Deborah R. Barnbaum, PhD, author of The Ethics of Autism: Among Them but Not of Them and Professor of Philosophy, Kent State University * Amy Lutz bravely tackles the myth of the intact mind that has become so prevalent in modern autism dialogue. Lutz acknowledges that the intact mind mantra provides families critical 'high octane hope,' but also poignantly emphasizes the real-life consequences of blind adherence to dogma in terms of vastly reduced critical life opportunities for some of the most vulnerable individuals along the autism spectrum. A must-read for anyone truly committed to seeing all the faces of autism and optimizing care and long-term outcomes for everyone. * Lee Elizabeth Wachtel, MD, Professor of Psychiatry, Johns Hopkins School of Medicine *

Author Information

Amy S. F. Lutz, PhD, is a historian of medicine at the University of Pennsylvania. She has written about severe autism for many platforms, including The Atlantic, Slate, Spectrum, and Psychology Today, as well as in two previous books: We Walk: Life with Severe Autism (2020) and Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children (2014). She is Vice President of the National Council on Severe Autism and lives outside Philadelphia with her husband and five children.

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